Up4it

[Sylvia1968]

Hi am totally terrified av just been diagnosed with PBC and haven't a clue what to do if theres anything a can do to help and in the last week av bn told av got AIH cany anyone help me on the right path please

[Ktltel]

Up4it, Sorry to hear about your health. We've all been where you are, at the beginning of our new health issues. It is frightening. But, take a deep breath. Here on this forum you'll find friends, comfort, and many times, answers from others who may be dealing with exactly what you're having to deal with. You're not alone. It seems once one gets an autoimmune disease, doctors find others lurking in our bodies. Try not to let anxiety get the best of you. It hard.. So many unknowns at this point I know. (You're hearing this from a person who had to go on Xanax for the first time when I was diagnosed back in September this year) Things will get better! PBC is not a death sentence. There is help. I see both a liver specialist AND a "good" Naturopath. Do a lot of research. Ask a lot of questions. You'll find many on here will be ready to offer comfort and advice. ❤

Stella

[Sylvia1968 in reply to Ktltel]

Thanx thats a great comfort , whete do i start researching the PBC or AIH am still a bit confused 🤔

[Ktltel in reply to Sylvia1968]

PBC foundation is a good place to start. I believe there are even phone numbers on their web page one can call for information. I'd Google AIH... Read all you can... the good, the bad and of course you'll come across scary info. Just glean through everything. As you do, write down questions for your doctor as you get more info. Ask specific questions here on this forum too.... many, if they can help, will try to answer you too. ❤

Stella

[Sylvia1968 in reply to Ktltel]

Thanx a million 😍

[Ktltel in reply to Sylvia1968]

I forgot... Are you in the UK or USA? PBC Foundation is UK based.

[Sylvia1968 in reply to Ktltel]

Uk just outside glasgow ☺

[Ktltel in reply to Sylvia1968]

Good. Those phone numbers will work perfect for you. I'm from U. S. Kansas. 😊

[Sylvia1968 in reply to Ktltel]

Aw fab howdy cowboy lol 😉

[Ktltel in reply to Sylvia1968]

Yes... Lol. I'm originally from California.. 😎I'm gonna have to Google Glasgow to see where ur at. ❤

[Sylvia1968 in reply to Ktltel]

The very cold part of Britain lol ⛄

[Ktltel in reply to Sylvia1968]

Scotland!

PBC makes it a small world! Nice to meet you!

[Sylvia1968 in reply to Ktltel]

Lovely to meet you too how long have you had PBC ?

[Ktltel in reply to Sylvia1968]

Had bad gastritis in Sept. this year. They did blood work and I was diagnosed 10/10/16. My life made a flip. Living on the flipside now. Still trying to wrap my head around it all.

[Sylvia1968 in reply to Ktltel]

Same hear Septemberfor me too and jst last week with AIH very low with low thoughts of it still but trying to keep ma head up out doors trying to get in to that positive thinking moad but still slipping in to lows 😊🙁😊 up down up down all day every day to be honest x

[Ktltel in reply to Sylvia1968]

How interesting you say that. I keep telling my friends and even my husband that this is like a rollar coaster ride. Up one day... Down the next. Hang in there. Do the best you can. Don't over do too much. Don't over think it either. That causes anxiety. The human body is resilient. Take good care of it with you're new diagnosis. ❤ Wish I had. Trying to now. 😧

[Sylvia1968 in reply to Ktltel]

You sound stronger than me am usual strong but not when its about me 🙄 typical

[Ktltel in reply to Sylvia1968]

Lol.... Me too. Do you guys have the expression....

Physician, heal thy self?

In other words, I can dish it out.... But it's sure hard to practice what I preach. Lol, I'm trying. ❤

[Sylvia1968 in reply to Ktltel]

Yeah thats how a feel a can tell others but can't practice what I preach lol 😉

[Kate50 in reply to Sylvia1968]

Hi Sylvia1968, I also live just outside Glasgow and have pbc, I was diagnosed almost 15yrs ago if I can help you just ask and I'll do my best , I remember all too well being terrified when I was first diagnosed , take care 💜

[Sylvia1968 in reply to Kate50]

Hi how have you couped ? is there a diet to help or things a should never eat am very confused still 🤔

[Kate50 in reply to Sylvia1968]

I would suggest joining the pbc foundation in Edinburgh, they have a wealth of information, much more so than anywhere else, you will probably find over time that you get lots of different advice , I was unfortunate and pbc for me was quite aggressive and I had a liver transplant just over a year ago but for a lot of people it doesn't come to that, have you been prescribed urso, also I was always just told to eat a healthy balanced diet , do you have any symptoms, for me the worse was itching and fatigue , 😘

[PatriciaHebrides in reply to Sylvia1968]

Hi Sylvia, I am from Scotland too.

Diagnosed about 5 years ago and been on Urso since then.

Yes - do get in touch with the pbc Foundation, they are very good very helpful and provided lots of info.

[Sylvia1968 in reply to PatriciaHebrides]

Aw thanx how are you ? any symptoms ?

[LenaChandler54 in reply to Ktltel]

Kktel what naturopathy do you use? I am taking a herbal mixture my medical herbalist has put together for my d osteoporosis. I refuse to take the nasty Alendronic acid for the bones as some research say it makes the bones more brittle and likely to fracture. Any thoughts anybody please? otherwise I was diagnosed 6 years ago and mainly have joint problems and lethargy from it.

[Ktltel in reply to LenaChandler54]

Hello, I'm in the U. S. Kansas. I see Dr. Christina Adonian in Kansas City. But she is over an hour away. I may start seeing Dr. Khosh in Lawrence, KS. which is 30 min. from me.

[LenaChandler54 in reply to Ktltel]

thank you. What do you actually take?

[Sylvia1968 in reply to LenaChandler54]

Am on URSO at moment 1 twice a day but waiting on blood results to see if a need to go on to steroids which am not looking forward to 😝 xx

[lizagood1 in reply to Sylvia1968]

Hi Sylvia, I'm butting in this post a little, but I was told that I would have to have steroids if there was tissue damage, is that how it's checked by blood tests?

[Sylvia1968 in reply to lizagood1]

I think so not quite sure but thats wot doc told me but if you hear anything else let me no ur not butting in thats how this works 😊 and hi xx

[lizagood1 in reply to Sylvia1968]

Thank you Sylvia, I will certainly let you know. This PBC is definitely a journey into the unknown and this forum is really helpful being able to share issues. Thanks again 😄

[Sylvia1968 in reply to lizagood1]

Oh defo its made me relax a bit knowing there more people out there with the same sort of things a panicked alot at 1st but relaxed a bit over this week 🖒 lol xx

[Ktltel in reply to LenaChandler54]

Spainspain2,

She mixed a " tincture" for me. I'm not really sure what's in it. I take 3 drops under my tongue twice a day. Supposed to be for Liver and bile ducts. Plus I take supplements from her too. Some for digestion, some for my Liver, and some for my immune system and hormones. I will say though, I was on them for 2 1/2 weeks, felt good but when I had blood work done in the next few days, my liver enzymes went up. It scared me. Then I had my biopsy and ERCP the day after that and it kicked me into pancreatitis and I was hospitalized for 3 days. So I was off of my tincture and supplements for about a week. When they did blood work my last day in the hospital my Liver enzymes had gone back down. ???? Now I'm afraid to go back on them.

[Sylvia1968 in reply to Ktltel]

Ano its whirlwindjst now and dnt no whats best either yet av not had ma last blood works back so mabe a good sign they dnt seam to be as much in a panic as i am so dnt no what to do am getting head up till Christmas then all get into it more a think just need to plod on till then av no pains jst fatigue and itch but am at best in mornings which is good as i work morning it'sjst getting up at 1st but thats always been case with most people lol read possitive things and do self healing a believe it works xx

[LenaChandler54 in reply to Ktltel]

oh dear, sorry to hear about the reaction but good all is better again. Yes mine is a tincture too take 5 mls am and same pm. Suppose to help for osteoporosis too.

[Sylvia1968 in reply to LenaChandler54]

Is there anything you can prescribe to take ? alternative medicine is great xx

[Ktltel in reply to Sylvia1968]

Sylvia1968, Also I was told organic Beet root juice was very good for the Liver. Check out my post below to spainspain about what my naturopath gave me. I'm actually not taking them now. I took them for 2 1/2 weeks but my liver enzymes went up when I had blood work done so, stopped until my next labs which is tomorrow.

[Sylvia1968 in reply to Ktltel]

Think beetroot juice is very good 4 you so don't surprise me let me no how you get on tomorrow at least your getting seen quickly xx

[LenaChandler54 in reply to Ktltel]

hope your blood results are good today x

[Ktltel in reply to LenaChandler54]

Spainspain2,

The naturopath made me up a "tincture" (as in.. I don't know what's in it exactly) it's supposed to be for my bile ducts.. Etc. Also she gave me supplements... By Standard Process: A-F Betafood, also by Standard Process: Symplex-F. By Metabolic Maintenance: Dim Complex Diindolylmethane with CoFactors. There are others but those are for gastritis and for leaky gut. I hope this answers your question.

[slck]

When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature, as well as Ulcerative Colitis, another auto immune conditon. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of resources that will help to answer them.

Warren

[Sylvia1968 in reply to slck]

Thanks very much for this and you time all get on to this as soon as possible thank you again xx

[LindyRich]

Hi

Hang in there it will get better. I panicked when I was diagnosed. now I have got over the shock I feel much better.

You don't mention any symptoms? do you have any yet?

[Sylvia1968 in reply to LindyRich]

Fatigue and itchy in very random odd places lol xx

[Bonnieanne54]

I was diagnosed 21 years ago when my dr took a stab in the dark. I didn't freak out because I had no idea what it was. He gave me Urso and I'm fine except tired and itchy back. I read these blogs and feel incredible blessed